Showing posts with label support. Show all posts
Showing posts with label support. Show all posts

Thursday, 29 May 2014

There For the Rainy Days



I am constantly amazed by people.  I know I know, that's very broad.  I don't know how to be more specific.  Stress in life brings out people's true colors, and sometimes it's so very hard to accept.  Autism is the ultimate relationship tester- I am not just talking marriage, I am talking every relationship.  You just never know who will be standing there 4 years down the line.   People who seemed  supportive through the happy times in our lives have,  poof! disappeared.  People who we  loved very much.  And I can no longer see the point in fighting for something that must have never been there to begin with.  We are too busy fighting for our boys.  It has taken me years, and many many tears to come to this realization.  I will be honest though, it is extremely freeing, I feel more at peace when I frame things in this way.

On the positive end of things- in the past 4 years so many amazing people have entered our lives.  People who would give you their last dime, or offer to watch your children on their one day off of the week just to give you some respite.  People I didn't even know when we started this journey, people who I met and was sobbing to within 5 minutes, and they STILL love me, and then the near and dear friends who are still there after everything.  You are the biggest blessings in our lives.  You know who you are- Jo, Rhonda, Sam, Kate, Kendra, Sarah, Megs, Cisco, Carla, Whitney, our parents, Allison, Helen B, Nicole, Lexi, heck, Dr. Vickers who has become a lifeline to me- you all have enriched our lives so very much.  And you have ALL watched me cry- not that it's unusual or anything these past few years.  There are so many others, people I worked with at Hopkins who I didn't talk to for years who reached out when all of this happened, friends from college who are in similar boats....every word of encouragement means so so much.  I try to give as good as I get, and I hope you all know that, I know that sometimes I suck, so please forgive me.

These past few months have been extremely difficult on our family spiritually and financially.  We have undertaken some very time consuming, challenging therapies with the boys.  It's very draining going through all of this with them- it's also very rewarding to hear your previously non-verbal 4 year old son say "Lawrence" clear as can be (well to me)- the name of one of his caregivers at Cisco Center.  So we are plugging along, as usual, barely making it.  But the people above see me looking tired and jump to help, ask what we need, offer support.  It amazes me, and reminds me that we are good people, that we deserve this love and support.  It reminds me of this statement, which I see pop up all the time on facebook and pinterest- this is exactly what all autism families should tuck in their back pockets and pull out whenever they are feeling isolated, rejected or low.

Thursday, 5 September 2013

An Absolute Tragedy For The Autism Community

This is one of the most difficult posts I have had to write. But it needs to be said and people need to be informed.  The past few weeks I have posted a few times and been in a bad place- depressed, anxious, scared, feeling helpless.  And my children are 3 and 6.  I have barely begun this journey, which is a thought that overwhelms me too much to consider on a daily basis. 

I’m sure that most of you recall the story of the mother who attempted to kill her autistic son with a sleeping pill overdose and when that didn’t work, she stabbed him to death.  It’s a horrendous story, not only for the evil act perpetrated by the mother but for the lack of help that she felt was available to her.  That’s one such story.

Today I need to tell you another one.  Of a well-respected, autism advocate, blogging mom who is about to be charged with the attempted murder of her 14 year old autistic daughter.  They were found unconscious in their van with charcoal grills burning inside and the windows rolled up, thus, carbon monoxide poisoning.  I read her blog, not all the time, but I read it.  It is very popular.  She is well-educated; her husband is an elementary school principal.  Her community was involved and supportive.  But her daughter had a propensity for extreme violence, making a peaceful home life impossible and educational placement of course problematic.   When I think about the fights  I take on every single day for each of my boys and add another 9 years to it, and add violence towards mom to the equation, it makes my heart sick.
A little more about this family:



Here is what I can say with confidence.  These feelings do not happen overnight, this type of desperation does not happen overnight.  Her love for her daughter is clearly written in post after post after post.  Can we call this woman an evil person?  I personally don’t think so.  She did a horrible horrible thing, and my heart goes out to her daughter, her husband and the rest of her family.  Did they see this coming?  I am sure not.  So if I feel blind sighted right now, imagine how they must feel.  And I am not alone in the autism community; below I will share with you just two of the MANY reactive posts I have seen today:


 Stories like these demonstrate the darker side of what can happen to even the strongest parents faced with the challenges that autism brings.  Fighting every single day to give your child what they need and DESERVE is exhausting, it’s disheartening, and your heart and spirit will start to break after a while.  Rarely, if ever, is a needed service provided without fuss.  The parents dealing with these issues feel isolated, they feel powerless, and just when things may seem to be heading in a good direction the rug can be pulled right out from under them yet again and they are right back at the beginning.  This happens to me over and over again. 

I want to say this to every single individual who has ever read my blog.  Please keep reading.  Know that my frustrations are very typical of what other autism parents go through, that my depression, anxiety, fearfulness, and occasional hopelessness are not unique nor are they odd.  Please accept my family’s life as reality and know that we are some of the lucky ones- we have had people back out of our lives, but the vast majority of people have supported and loved us.  And our children.  To those of you who contact me regularly, please don’t stop.  Even if I don’t reply sometimes, your words are like a mental burst of energy.  You are building me up to deal with what I need to do.  You are helping my children.  I have other autism parents that I at the very least, instant message with every single day.  We need to keep doing this, and hearing each other.  We need the reminder that we are not alone, that someone understands, that someone is there.  .

I am not suggesting that this could happen with any of the families I have been in contact with (although if I’m being honest- it just did, right?)- what I am saying is that we can all imagine and to a certain extent even empathize with what she was feeling, with what drove her to this point.



Look at her blog entry from September 3rd:


Look at what happened on the 4th. It doesn’t take a rocket scientist to connect the dots. 




We need to be there for each other.  And we need to pray for this family.